More than 4 in 5 people with diabetes have experienced stigma while living with their condition.

Type 1 diabetes study participants Harrie and Lexi with their mother Rachael
Type 1 diabetes study participants Harrie and Lexi with their mother Rachael

But one study across Australia, with one of 11 sites at the RMH, is hoping to end stigma towards people living with type 1 diabetes (T1D).

The Environmental Determinants of Islet Autoimmunity (ENDIA) study is looking at what causes T1D and, through their findings, ways to prevent it.

ENDIA has so far recruited 1500 babies and children from pregnant women who have T1D or pregnant women who have a partner or another child with T1D. The children and mothers donate samples every 3 to 6 months from birth to 10 years of age.

Children just like Harrie and Lexi, whose mother Rachael is living with T1D.

Rachael said “fortunately” she hasn’t experienced the level of stigma most pregnant women with T1D face, but stresses that it is very common.

“When I was pregnant with Harrie and Lexi, I was lucky to have an obstetrician who was familiar with T1D, but it is not the case for many other women,” she said.

“It's still a common perception that if a mother has T1D that the child will automatically be born with it too,”

“It can be a very stressful time for expectant mothers.”

ENDIA Study Coordinator and Nurse Belinda Moore said women with T1D often give birth to larger babies, causing this stigma.

“The reason why is unknown, but there is a lot of blame and shame on the women when they birth bigger babies suggesting that they had sub-optimal glycaemic management in pregnancy, when this may not be the case,” she said.

ENDIA Principal Investigator, RMH Endocrinologist Associate Professor John Wentworth said the data shows that mothers with T1D are less likely than other family members with T1D, to pass on the condition to their child.

“We think that the mum with T1D may provide some protective factors to the child in utero, and we’re trying to tease out what those factors may be.”

The incidence of T1D has doubled in Australia in the past 20 years. ENDIA investigators think multiple environmental triggers have caused this to increase.

“As ENDIA is a longitudinal study, we are still gathering data, but it will be interesting to see how these theories play out.”

Rachael has remarked that Harrie and Lexi “really enjoy” visits from the ENDIA team, and has helped them learn about their mother’s condition.

“The girls have got a really good understanding of diabetes now, and how their samples give back to the research community,” she said.

“We’re really happy to be involved.”

Recruitment to the ENDIA study has closed. A/Prof Wentworth is co-leading another type 1 diabetes study, Type1Screen. If you have a family history of T1D and are looking to check your or your child's risk, head to Type1Screen's website.

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